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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Won SSDA in the reconsideration phase and before the appeal stage!

Discussion in 'Finances, Work, and Disability' started by lartista, Mar 5, 2011.

  1. lartista

    lartista Senior Member

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    SSHi,
    I wanted to say it is possible to win SSDA pension after 20 months of pure hell. But I did it. I had been through UNUM's process and I won after 18 months and before a denial. This time with SSDA, I got a denial and then paid for more tests and for my own independant specialist. It was written in a very special way handling the issues SSDA needs. But the reality is I have been severe for at least 4.5 years, that's never been in question. Good luck and keep your stress down.:victory:
     
  2. SpecialK82

    SpecialK82 Senior Member

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    Congratulations, that is terrific! :balloons::victory::balloons:

    How wonderful that your fight is over, although I'm sorry that you had to go through it as long as you did. Thanks for reminding us that perserverance can pay off.

    Can I asked what tests you had done that were the most convincing?
     
  3. Esther12

    Esther12 Senior Member

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    Great news. Hope you're able to enjoy it, and the free time you'll have now your case is over.
     
  4. lartista

    lartista Senior Member

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    This is going to sound strange but the last test was a SPECT BRAIN SCAN which I paid for out of pocket. The labels of my illnesses were all over the board and the bizarre symptoms where documented for these past 5 years, just written up as bizarre or some type of stroke damage or mental illness. When they did the spect brain scan no stroke damage or mental illnesses where found. Which even surprised me. They found a Little bit of damage from they believe a early car accident, no bipolar, no schizo, no depression, just some axiety for my Complex PTSD. The full neurological work up from Unum demonstrated a 15% loss in my working memory in less than 4 years. They also believe there were some compromises from the heart lung machine. But what it all added up to was that all the diagnosis the doctors gave me that it was stroke or mental illness showed zero but I also passed all the malingering tests that I was in pain and not lying. What I learned out of this is: your must have specialists in the field of illness, it must be documented longer than 2 years serious before they will even blink, there must be demonstrated attempts as taking and losing brainless jobs, your must demonstrate that the frequencies of decompenstion are frequent and more than 3 times a year in Lenght greater than 2 weeks. You must have some one address and support why you are not re-trainable for a mindless job and pain is not enough. It seems to me that if you do not study every degree of their needs to be met, they have to deny your because the majority of them have too deny you because you didn't address everything to allow them to approve you. When I got the first denial letter and tried to file for a reconsideration, the woman OUT RIGHT LIED to me and said there was no such thing as a RECONSIDERATION. She said you must do an appeal, which was not true. I read the denial well and addresses what they said my few strenghts were as they already outlined my weakness in writing. Then I hired Dr. Theodore Henderson in Colorado along with Cerescan and got to work. The issue is that when i walked in there I expected I would be found CRAZY, full of mental illness because of what I had been told for years or they would find the stroke damage which doctors where convinced i had. Neither was found but CFS and XMRV was the result. Sorry so long but I want to help others should they read this thread. Now keep in mind... I am still a little in shock of the new label but what I keep studying on the internet, this doctor pegged it right!
     
  5. SpecialK82

    SpecialK82 Senior Member

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    interesting about SPECT SCAN - I have asked for one before and my doctor has said no. He said that insurance companies don't beleive in it and they won't pay for it. I have never understood why SPECT's aren't used more. I had no idea that mental illnesses can be detected?? Does it just measure your blood flow, and what parts of the brain are getting blood, etc.

    Thanks for your post!
     
  6. zoe.a.m.

    zoe.a.m. Senior Member

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    I too am curious about the SPECT scan! I used to read Dr. Amen's work when I was working with children and his books had scan photos of all sorts of different dysfunction. Were you able to get any of the cost of the scan covered? And where were you able to get it done?

    Your story of getting SSDA approval is fascinating; I just went through the hearing process myself and know even less about it now than I did before I think... I did get my hearing a year ahead of schedule though, so I'm starting to think someone is putting some pressure on these cases. Have you found out any of the specifics of your approval yet? I have heard it takes 60 days to receive any info and I've got almost 25 to go... Congratulations!
     
  7. caledonia

    caledonia

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    After the hearing, you should get a letter from the judge saying why he decided to approve you. I had submitted my own neuropsych test and functional capacity evaluation, which are excellent tests for ME/CFS. My insurance paid for those.

    Those proved that I was too sick to work, but the thing my judge liked the best was that I had documented 2 years of continuing disability, which implied that I wasn't going to get better any time soon. I did that by going to my doc every 3 months and documenting that I continued to be disabled. My lawyer had a nifty form for my doc to fill out to that effect.

    The wait times do seem to be improving somewhat. They were talking about getting rid of reconsideration altogether, but it sounds like that hasn't happened. I know they were experimenting with not having it in some areas.

    If you're in really dire straits, like about to lose your house, you can contact your congressperson's constituent services office and get them to expedite your hearing.
     
  8. caledonia

    caledonia

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    After the hearing, you should get a letter from the judge saying why he decided to approve you. I had submitted my own neuropsych test and functional capacity evaluation, which are excellent tests for ME/CFS. My insurance paid for those.

    Those proved that I was too sick to work, but the thing my judge liked the best was that I had documented 2 years of continuing disability, which implied that I wasn't going to get better any time soon. I did that by going to my doc every 3 months and documenting that I continued to be disabled. My lawyer had a nifty form for my doc to fill out to that effect.

    The wait times do seem to be improving somewhat. They were talking about getting rid of reconsideration altogether, but it sounds like that hasn't happened. I know they were experimenting with not having it in some areas a few years back.
     
  9. SpecialK82

    SpecialK82 Senior Member

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    Hey caledonia :) what type of doc did you go to for the neuropsych test and the functional capacitiy evaluation?
    If I remember this correctly, someone had told me that they had a cognitive function test that took 8 - 10 hrs, is that the functional capacity or is it something different?

    zoea.m. - congratulations on getting an early hearing, let's hope that wait times really are improving! How long did you wait in each of the other stages?
     
  10. zoe.a.m.

    zoe.a.m. Senior Member

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    I think I originally filed for disability in the fall of 2008 and it was rejected within a few months. I did the appeal and another few months later, it was denied again. I filed for the hearing stage and received the notice of a hearing right before Christmas of 2010 stating that it would be 24 months before my hearing and to get a lawyer, and that most of the action would take place in the 6 months before the hearing. The lawyer told me that it could be as little as 18 months, but generally adhered to the 24-month timeline. Imagine my surprise (because I needed a lot of work gathering evidence since my PCP is an ARNP, not an MD, and I'd agreed to seek out an MD with knowledge of ME/CFS) and had about 7 specialists yet to see, when I got the notice in December 2010 that my hearing was on Feb. 1st, 2011! My lawyer dropped the case, my PCP got right into getting records ready and writing a narrative, but it was a bit of a mess because I couldn't get the info I'd been planning and, with the holidays, no one had time to put the case together really... I was lucky to find a lawyer 3 wks before the hearing who took over all of the record stuff and everything and pounded the case out in that amount of time. I worked with my PCP to get the letter done within 5 days of the hearing and, after much ado, was too sick to show at the hearing, was going to testify by phone, but the judge and my lawyer spoke a few times and, right before I was supposed to testify, I got a call that the judge had approved my case and it was done and disability would be established back to the time of 2008 (when I applied) and the only way to try to go back further would be to testify/or set another court date, and that disability would only go back so far, so I took that deal. Since then, I've yet to hear anything (I think my lawyer said 60 days to get the paperwork from the judge and then SSD/SSDI (don't know yet), but it's just as well because it's a lot to process and getting buried under paperwork after the months of stress before the hearing would have been too much. My PCP has warned me to "not sign anything or agree to anything" immediately and that SSD will offer many different options and people can walk into mistakes, so to take my time.

    I realize this is way more info than you asked for, but it all just hits me like a wave when I think about it! And, FWIW, I had no specific ME/CFS workup or testing; I had only just (in 2010) had a major workup with blood cultures and looking for lymphoma, celiac, lupus, primary immune deficiency, etc. with little abnormalities, but some significant ones. My ME/CFS doc had suggested the MTHFR gene test in the fall of 2010, (he said that the majority of his substantial patient number had tested positive) and I suspect that might have been helpful in my test. Mostly, from what I understand about my case, the narrative really was the most important piece, and it was basically a 3-year/ 3-page patient history with specific objective findings that were consistent over the years and that also mentioned my attempts at work and graduate schooling and how a crash followed quickly each time.
     
  11. SpecialK82

    SpecialK82 Senior Member

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    zoe - that was an incredible journey, thanks for using your energy to tell it. I was horrified to hear that you were told your hearing would be in 24 months but then equally surprised when they sprang it on you in Feb. How strange! I'm glad that your decision was made much quicker than expected but the stress during that time period sounds unbearable. No wonder you were to sick for the hearing, I have wondered if they will handle on the phone if that is the case. I will be having an MTHFR soon and hadn't thought about it for disability, thanks for the tip.

    Congratulations on getting through this huge ordeal, this is a huge accomplishment, I hope that you have recovered from the stress.
     
  12. zoe.a.m.

    zoe.a.m. Senior Member

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    I don't want to hijack the thread but wanted to update since I finally received the judgment letter on Friday (60 days after the hearing). So... I guess I can't recommend whatever it was that I did because the decision was made based on my being positive for anxiety and depression and the fatigue being a result of that and not of an illness--although chronic fatigue syndrome is listed under reasons for judgment. I talked to someone from disability (the 1-800 number) and my lawyer and both said basically the same thing: You got a fully-favorable result and that's that. It's absolutely wild to me that all of the physiological findings seemed unimportant, and seeing a psychiatrist to talk about benzo tapering really ended up hurting my case. From what I understand, it's unusual to get a favorable result before the hearing even occurs (over lunch), but I feel like I paid for it by ending up with mental-health issues as the main reason for my disability! I wonder if this is the norm for people with ME/CFS or if my experience is unusual?? I was prepared for a system that would want to make it psychological, but that's why I went to the best lengths I could (without Klimas or Peterson or someone similar) to ensure that all physiological evidence was compiled. It's so offensive to me that the fact that depression and anxiety often accompany long-term severely-disabling illness is somehow separated and it's as though, well, in my case, "anxiety causes the fatigue"... Wow, I am not happy.
     
  13. SpecialK82

    SpecialK82 Senior Member

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    zoe

    zoe - that's terrible. Wow - we really still are in the dark ages. I'm happy that you got it but that is so frustrating.

    I sometimes think about that time in the future when CFS will be regarded as the disabling disease that it is - and the future people will think back on us and shudder to think what we all have endured.

    I guess now you just let it go and take care of yourself. Thanks for updating us!
     
  14. zoe.a.m.

    zoe.a.m. Senior Member

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    Thanks for your support on this SpecialK; I think I've just been confused about what is 'normal' whatever that means...? I finally got an opinion from someone who didn't speak to me like I was looking a gift horse in the mouth--my CFS doctor (whom I speak to with phone appointments)--and he said this is absolutely normal. Apparently, within Social Security, there is a movement to keep the number of favorable judgments for CFS down to an absolute minimum (I think we can all make some good guesses as to why that is) and so there is usually a move to just make it psychological, or else to add those in and have sort of a package deal. The dark ages indeed!

    There is certainly irony in this process... the relief/despair in truly being ruled fully disabled and then the stigma and consequences of an outlook we already don't want but needing to be grateful for the next step, and yes, taking care!
     
  15. taniaaust1

    taniaaust1 Senior Member

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    Zoe.. that is what I did too. I wanted depression and anxiety to be left out of the picture as they werent at all a major part of my trouble and I just hate how people like to think CFS/ME is psychological.

    Another issue we have with that, is if we get reassessed and we dont have the depression or anxiety no more, that can leave us in trouble if they've put down they gave us disablity due to those.

    Also if the government went into the disablity system like as in England of tiered payments (those with mental health disability get less then those with physical health issues), the focus on the depression/anxiety in CFS may end up making us only get the lower payment level.

    I have no idea how but the whole system needs a big change around how it is percieving CFS/ME.

    Anyway.. congratulations even if you arent happy about how things are right now. (I so hope that someday soon this will change).
     

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